Hepatitis C Support Group

Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

Horrible News or good news?

I have been taking Pegalated Interferon & Ribaviron for 15 weeks and was just informed that my viral load hasn't changed and therefore have been terminated from the program. To have endured this suffering for no benefit is really depressing. I have lost a lot of hair, closed my business, all for naught!

I was told that I could see my doctor in 2 to 3 months! I guess it is just an impersonal numbers game from my doctors perspective. It is like getting a death sentence through a messenger, with a polite "we are so sorry".

I guess the good news is that this torturous program is done. I was on the 48 week program before. This was to treat Hep C, genotype 1, stage 2. I have a reasonable low virile load of 465,000. My liver enzymes were actually normalized, so it blows my mind to be told that this didn't work.

I used to drink prodigious amounts of alcohol and now am not drinking at all. While no one can definitively say how long it will take to go from stage two to cirrhosis or liver cancer I wonder, realistically, how much time I have left? I have probably had this for 30 years. I went from stage 0 in 1990 to stage 2 in 2005. My doctor said that going from stage 2 to stage 4 is much more rapid. Any analytical people out there, willing to float an educated guess?

I haven't experienced any symptoms that I know of, from the disease. That is why is was a tough decision to commence this program in the first place.

I am just rambling. I guess I am having trouble dealing with the unknown.

i was gen 1a 48 week tx. i was told up front that if i didn't clear the virus at week 12 they would pull me off. the reason is that it is not working for you so why put you through 36 more weeks of hell for nothing. i did clear after 12 weeks, so i stayed on TX.

you at least gave your liver a BIG TIMEOUT. you will have to go from here and figure out your next course of action.

so sorry, I know this is crushing news. But you cant look at it as how much time you have left, because if you take good care of your self , your liver will not be taxed. You could live for a long time. Dont be around chemicals, and watch what you take in meds. Bide your tim , they are making progress all the time,You didnt do it for nothing, It gave your liver a rest, hugs barb

i was told the same from my dr as jwalsh said , if i hadnt cleared the virus by 12 weeks that they would take me off treatment , im so sory you seem scared , im geno 1 and stage 2 , i wish you the best (hugs)

This is not a death sentence. You did give your liver a rest through the tx. And being stage 2, it seems that you can wait until the new protease inhibitor drugs are available in 2012. They promise more like a 75-80% cure rate. But like Gator said, you might find a study that is using them now, like I'm on and like Gator is on (but don't try to do it yourself--ask the help of your doc). It's good you've stopped drinking as that would really make things worse. I think if I were you, I'd try to take the best care of my liver that I could, maybe even see a nutritionist to help you. No alcohol or other drugs, good diet, no fried or greasy foods, etc. You could request a biopsy every couple of years to put your mind at rest. And have your doc monitor your enzyme levels to make sure your liver continues to function normally. It's about 50/50 as to how many go on to cirrhosis, but certainly you would be much better off taking care of your liver. Good luck. Hugs.

Well, I was a responder, but I asked my doc what if I don't respond? He told me that there were other alternatives if the tx didn't work. Talk to your doc about these &quot;other alternatives&quot;. A lot of people die from other things while they have hep c. I wish I knew the progression rate. ASk your doc. I feel so bad for you right now. I know you must be depressed, and scared sick. REsearch!! I know there are other options. Please keep us posted. CAthie

yes, that's what they told me to before i started treatment. at week 12 if your viral load isn't significantly lower the odds are extremely low that treatment will work for you so why put your body through it.

the good news is that there are new treatments on the horizon! talk to 'gatorbuzz' as he is in a research study that is having amazing results! and it's suppose to be easier on your system. i thnk it'll be available in a few years. and you'll prob. be fine until then if you don't drink.

&quot;makiah&quot; has opted to not do treatment and is doing the natural route. you might like to talk to her to find out the health things she's doing to keep her liver healthy. she's done tons of research and really knows her stuff!

sorry you're having to go through this. it's all so stressful, isn't it? just don't give up on staying healthy! do everything you can do to not stress your body or your liver.

First off, sorry to hear that you were a non responder to the combo meds.

Your doctor knew this at your 12 weeks PCR test, and should have told you then, you would have know 6 weeks previously to quit the damn meds.

I tell you, in our days, we need to be our own health advocate, if only we would have met then.

Now, if you do not drink alcohol at all, live a healthy lifestyle, eat well, sleep well, take less medication as possible, no drugs, and exercise, you should be good, not sure what age your at, but you should be fine, as long as your keeping the above healthstyle you should live a normal life and die from something else.

Or at least buy time, to get into a new treatment which will be in the near future.

What I suggest you to do, is get a requisition from you PCP, to get your CBC done every 6 months, this way you will see if your enzymes are in pretty much normal range.

Then you could look on the web for clinical trials for non responder.

Don't forget you are a non responder, not a partial responder, or slow responder, a non responder there is a big difference.

Scientist are working on new treatments for each of the different responders since these meds have been on the market.

The best of luck to you, and please keep me posted if you want, and if you need any other questions or advice write me a message.

Oh yea, before I forget, what kind of bike do you ride, or do I have to ask?

Born2Ride:
You've already gotten a lot of good advice, so let me say &quot;ditto&quot; to all of that. MY Hep Nurse told me that the USUAL progression is about one stage per decade---which gives you a few years of good life before liver function problems begin to negatively affect your lifestyle.
Lotsa water, reasonable amount of exercise, ZERO alcohol (or other drugs that tax the liver), healthy diet, and annual bloodwork--- let those be your &quot;treatment&quot; until a better tx comes along.
I relapsed after 48 wks of misery on riba/interferon therapy. My dr offered me another LONGER tx rouine, and I declined.
One more thing (or two) .... lotsa people &quot;swear by&quot; milk thistle---some advocate high doses of Vitamin C. In fact, someone mentioned Vit C therapy in a discussion post just a day or two ago. Find and read their post; it might give you some good info and positive encouragement.
Hang in there, friend; if I can help, feel free to msg me
keefer

Thanks 2 all for your knowledge and support. I am amazed at the knowledge base of this group.

I look forward to getting my lungs back. The last bike ride I did over the week-end, I felt like excreting, vomiting &amp; passing out simultaneously after only a moderate climb.

I will also go back to my Chinese doctor that gives me a blend of herbs &amp; plants that I cook in a medicine cooker. It tastes nasty, but at least there is no depression or brain fog like with this last tx program.

As a &quot;non responder&quot; I am not eligible for any of the pilot programs testing new drugs. I'll be curious to learn about new medicines (hopefully with shorter treatment times) that come online in the future.

In the meantime I will continue taking my daily vitamin cocktails and continue living healthy. Now that I have come to terms with my prognosis I am committed to living the rest of my life with passion. Oh, by the way, does anybody know of any low security banks worth robbing?

I miss traveling with my husband. Has anyone found a specific site regarding cruising for widow/widowers or any sightseeing trips. Not interested in being with couples and kids,,,I realize a cruise ship will have a portion size of families and couples, but perhaps they also put together a part of the cruise ship for groups of widows/widowers????

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